help with 5 year old sons tics/tourettes

[n123]

My son started eye blink and head jerking tic in March this year. It started following an ear infection in Feb, followed by chicken pox, followed by another ear infection treated with antibiotics. Since then he has had many tics including scratching, picking nose, nail biting, sniffing, facial grimacing, burping. I live in the UK, and getting any help has been difficult. I tried to investigate PANDAS and saw a paediatrician privately who did a blood test (aso titresi think) which came back negative and he basically discharged us. I have cut out tv/vdu which initially helped with the eye blink and head jerk tic. This tic is now back with a vengeance, the head herking can be quite vicious. I have no idea why this has returned. His diet is good, no junk, he has had acupuncture with little effect. Normal EEG. Am desperate. My son only turned 5 in August and this is breaking my heart. I currently give him Saludynam (mag/zinc/cslcium/vit D) and Kindervital multivitamin. Any help in how to alleviate these tics would be much appreciated.

[Chemar]

Hi there

with all this being preceeded by the illness I would really recommend investigating a possible PANS (not necessarily PANDAS) cause?

 

The parents on our other forum may be able to give you some insight and perhaps there are members there in the UK as well.

http://latitudes.org/forums/index.php?showforum=17

 

I also really recommend getting Sheila's book as it has a wealth of helpful info on ways to help with tics, nomatter what the actual diagnosis is

http://latitudes.org/store/tics-tourettes-book/

[n123]

Thanks for your response. I will look into this.

[Pilbara]

Try and find a biomedical or integrative doctors, they really try and find the route cause and not just treat the symptoms. Naturopaths are also a good place to start. My DS started with the hard blinking as well. I hated the head jerking phase. Definitely read Shiela's book recommended above. Other things to look at is heavy metal toxicity (tested through a hair sample). Have hope that lots of us with kids with TS do get significant improvement through natural treatment. My DS gets triggered off by certain chemicals in his food and particularly in the environment, but for the most part his tics are now extremely minor.

 

Good luck

[Tiger]

Hi n123, your sons symptoms are very similar to my son .

In Dec 2012 my son had what the doctors said was scarlet fever, massive tonsils, fever & rough dry skin it was like sand paper in the armpits & creases. It took him a long time to recover & this is when we first noticed a change in him - he became very anti school, anxious, clingy & a complained of a constant itch back & itchy labels on clothes.

Just after he turned 5, in march 2013 he had a pusy thumb nail infection, then a suspected urine infection (when I look back this was probably the urine frequency part of PANDAS/PANs or possibly a bladder tic). Straight after he had 2 fevers in the space of 3 weeks - 3 lots of antibiotics. What followed was lots of changes in his behaviour, it was like having a different boy in the house. Explosive meltdowns, all emotions were off the scale, oppositional & aggressive behaviour, extreme intense bursts of hyperactiviy in the mornings then, slow speech & depressive moods in the afternoon, short term memory issues - patching out, constant verbal commentary of things he was doing/thinking, regression in understanding previously established boundaries, regression in his vocabulary ( it was usually very advanced compared to his twin), lack of confidence in reading, writing ( I think was due to his regression & onset of cognitive issues possibly, perhaps even a thought tic - he was very aware that he couldn't think as well as before & commented on it often - ' mama i cant use the words I want to, poor me. I have a buzzing in my head all the time & its like there's a web in my brain catching & stopping all my thoughts coming to my mouth').

Then in May 2013 we noticed the first tic - head flick, a month later it changed to eyebrow raising/frowning, 4 months later we saw heavy blinking & eyeball rolling. Since then its been the eyebrown tic on & off for the last year. We are still at a loss but PANDAS ticks a lot of the boxes, that accompanied by candida & posssily food sensitivities. I've taken him gluten, dairy & TV free for the last year & its made such an improvement the diet has been positive to his moods & the TV is definitely a trigger for his tics. It hasnt been easy & I'm still looking for professional help, his GP & paedtrician are dismissive & just tell me to ignore the tics & never mention them to him - Of course! Cant believe I had to wait 6 months & that was the only help they gave. They did do ASOT at my request but only to shut me up, I was told the result was normal so to stop exploring that avenue - quote ' ust go away and relax'. We are in the UK too you might know us if you've been in touch with the UK PANDAS group. I've only just joined this site today. I'm always here to listen & share x